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How Many People Are Actually Self-diagnosed?


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123 replies to this topic

#76 zergcoffeebean

 
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Posted 12 January 2011 - 07:18 PM

Self-diagnosed with my doctor agreeing. We were going to do the blood work and biopsy, but when I tried to eat gluten again to get ready, I was completely miserable. So I didn't bother. Nothing could MAKE me go through that again. So here I am, going almost a year gluten-free (though I've only gone 3 months without CC, simply because I live in a house with 5 gluten eaters).
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gluten-free since February 2010.
Hypothyroidism as of July 9th, 2010

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#77 FooGirlsMom

 
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Posted 12 January 2011 - 08:22 PM

And what about all those Atkins people? How many of those that stick to the diet do so because the lack of gluten has made them feel better, and they don't even realize that that's what it is.


Yeah- hey! I was one of those "Atkins People" for over 11 years! I never could figure out why I would detox for 2 weeks solid, then feel great but everytime I tried to eat pkg'd low carb food (hidden gluten) I feel awful but if I ate fruit I was ok ???? Talk about confusion. There are a TON of low carbers out there that can't lose weight or feel right except on the diet. The sad part is that so many of them probably do not have to be completely grain free. They just need to be OCD about gluten & possibly dairy.

I am self-diagnosed by the way. After racking up about a dozen symptoms over a 2 yr. period (after going off Atkins) I felt like I was dying. I ran into a friend with Celiac and made the connection. The only way I'd been eating (to feel well for about 13 years) was 2 different diets that were both gluten & dairy free. Guess what? I'm feeling better! I've been gluten free & mostly dairy free for about 3 months. Ha - amazing.

I would have tried to get a diagnosis (for the sake of my kids and have them tested too) but this all happened right after my DH was laid off & we don't have Med. Insurance. Now it's too late but I have my answer. I've been proving it myself for 11 of the last 13 years that I'm either Celiac or Gluten Intolerant.

It's a relief just to finally know what this is - not just treating symptoms & happening on something that worked.

FooGirlsMom
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

#78 lynnelise

 
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Posted 13 January 2011 - 07:19 AM

I am another that couldn't understand why I felt so great on the first stage of the South Beach Diet and then went downhill when I started adding in whole grains and fruits. I never made the connection. I ate whole wheat everything because I thought it was healthy. I thought my bathroom issues were due to having my gallbladder removed. I eventually went on to have constant stomach pain, reoccuring outbreaks of shingles, mono, the flu, repeat sinus and bladder infections, rashes, it was nightmare the last year on gluten. I had an EGD to check for an ulcer and they told me I had gastritis and noted significant inflammation in my small intestines but didn't biopsy for celiac (I'm in WV and basically doctors here act like they've never heard of it)! I kept getting sicker and finally my cousin who works for GI doc in Maryland asked me to send her all the records from my labs and the EGD so the doc she worked with could review them. She immediately called and said he said it looked like celiac and to quit eating gluten and see if I felt better and sure enough. That was the problem the whole time.
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#79 cO_ol

 
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Posted 13 January 2011 - 03:26 PM

I think many doctors are less inclined to listen to women, especially young women, treating them as if they are hysterical and attributing all symptoms to "depression".


This was my experience. I'M JUST A STUPID LITTLE GIRL WHO DOESN'T KNOW BETTER!!!!!!!!

By the time I suspected Celiac, I had two issues: The anxiety from hell, and the fiery hatred of a trillion suns for being dismissed. Oh, and fatigue didn't help. This meant that having to look for and deal with another doctor was an absolutely terrifying thing for me. I had every intention of looking up doctors, or maybe calling an old one to ask for the testing, but I kept hemming and hawing and procrastinating. MY WHOLE LIFE EXPERIENCE WITH DOCTORS (well, I had a nice pediatrician, I guess) up to this point was one of either dismissal and =!@$#$^& or ignorance. Not encouraging.

So I just said, "&%$# it I'm just going to go gluten free." And what do you know, that's my issue. My parents see how serious I am about this and they've told me they're proud of me. The only issue is that they don't realize they very well could have it. But I don't know if an official diagnosis would make them more receptive to the idea that they could be Celiacs too.

All this to say, I'm self-diagnosed. :P
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Docs said it was depression, which was in my case code for, "It's all in your head."
I replied (in my head, alas) with expletives that I don't think are allowed on here. xD
Self-dx'd Celiac just beginning my very bumpy gluten-free journey. My healing process is looking a lot like my deterioration was (rather non-linear)...
Praise be unto the (gluten-free, vegan) Flying Spaghetti Monster for the folks who worked so hard to raise awareness (and Internet to access it)! Y'all saved me decades of suffering most likely. :D

#80 StephHappens

 
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Posted 16 January 2011 - 08:16 PM

After 4 years of feeling horrible (headaches, jaw ache, extreme fatigue, sick-like having a cold all the time, feeling like Alzheimers coming on) my doctor ran a test for allergies and included a Celiac test without telling me. He called one night and said, "Your blood work came back positive for Celiac Disease. You need to see a gastroenterologist. My phone is cutting out, bye." That was it! I had to Google it!

I followed up with endoscopy from gastroenterologist and he confirmed. It has only been 3 weeks, 3 confusing weeks. Glad to know I am not a hypochondriac, like my doctor made me feel for the last year.
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#81 LivesIntheSun

 
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Posted 16 January 2011 - 10:04 PM

Like many people here I feel extremely let-down by my doctors' inability to twig on in the face of what now seem like some pretty obvious symptoms- recurrent canker sores, total exhaustion, severe depression since childhood. Medicated (ineffectively) for the depression, and told to go away and deal with the canker sores and tiredness, they didn't know why and once they'd established that I didn't have cancer in my mouth they didn't know what else to suggest. Many miserable years.

My suffering lead me to search high and low for help and THANKFULLY I eventually visited a nutritionist and she said she suspected I had been celiac since birth. A gluten-free diet very rapidly eliminated my symptoms, and I've been ulcer-free, depression-free since I started the diet(about 3 years), plus I can stay awake all day B) I was able to wean myself off all my meds about a year after starting the diet, and I haven't looked back, now I can roll with the punches. Any accidental glutenings lead to a dramatic return of symptoms for a few days. I haven't been back to see my doctor in all this time, I'm not going to hold my breath as to what her reaction would be <_< Honestly, I would love a proper diagnosis but I don't think it's possible at this point. Might pay for the genetic testing. If I could get an appointment with a sympathetic doctor who might diagnose according to symptoms that would be sweet, but I'm feeling pretty cynical about doctors and like I just need to get on with looking after myself.
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#82 Lalama

 
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Posted 18 January 2011 - 09:28 AM

I am also self diagnosed-with my nutrionist who agreed with me. I had "ibs" issues since I was a child including joint pain, ITP (platelet levels drop extremely low), bad acne, fatigue, brain fog, bad menstrual cycles. Then in 2009 I had dh on the back of my elbows that persisted for eight months and then directly after that I had appendicitis.

After the appendicitis suddenly I got dh on my face and scalp and my hair started falling out. I was determined to figure out what was going on. At the time I had no idea these symptoms were connected to gluten. I had been to a bunch of doctors in the past who were of no help and only wanted to medicate my symptoms. God answered my prayers when I happened to find a diet online to help with menstrul cramps (as they were getting really bad) Well the diet said to cut out all gluten and dairy, so I did for one month and all my symptoms drastically improved-suddenly the light bulb went on. I am gluten and mostly dairy free now for 4 months and am feeling so much better!
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#83 mcc0523

 
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Posted 27 January 2011 - 05:56 PM

Like many of the illnesses in my signature, I diagnosed myself with celiac first. Actually, I'm not "official" right now, but a high IgG from recent lab work (I only got it after I called a month later and made them fax it to me... :angry: ) and symptom relief from avoiding gluten pretty much speaks for itself. After many years of "IBS", depression, nerve pain, fatigue, insomnia (alternated with days that I just can't get out of bed), joint pain, a hiatal hernia, and many other symptoms (I swear, I could have written the majority of posts in this thread), I have recently decided to go gluten free.

I was first diagnosed with the POTS, and then 9 months later, EDS. I have met too many people with EDS on various message boards and forums who have had issues with either celiac or gluten-intolerance to ignore the fact that I should at least investigate it. I've since read some statistics that there is a higher incidence of celiac with those who also have EDS. Also, right around the first time I started suspecting that gluten might be exacerbating my underlying health conditions, at least two of my friends started asking how much gluten I was eating, and suggested that I give it at least a month.
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DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

#84 FooGirlsMom

 
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Posted 28 January 2011 - 06:50 AM

You really shouldn't be so surprised; the estimate is that for every one celiac diagnosed there are 29 undiagnosed. And celiac is usually the very last thing that pops into a doctor's mind, because the drug detailers have not educated them on it :o


This is so true. The drug companies seem to do all the "educating" of the medical community after they get their MD. Celiac/Gluten Intolerance cannot be "cured" or even "masked" with drugs. It is only the old-fashioned way - through diet - it can be managed. They have no interest in it because there is no profit in it.

FooGirlsMom
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When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

#85 IrishHeart

 
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Posted 29 January 2011 - 08:42 AM

This is so true. The drug companies seem to do all the "educating" of the medical community after they get their MD. Celiac/Gluten Intolerance cannot be "cured" or even "masked" with drugs. It is only the old-fashioned way - through diet - it can be managed. They have no interest in it because there is no profit in it.

FooGirlsMom


Hi all!
I am new here but I want to chime in on both topics if I may.

Self-diagnosed with confirmation from a doctor.Finally!!

Totally agree with you about the $$$ made from NOT diagnosing, just symptom-management with DRUGS. This is a long answer (sorry!) but shows how much they rely on drugs and surgeries to solve problems when a proper diagnosis and dietary change could have spared me years of misery.

I have had horrible bouts with gastro symptoms for over 12 years (at times so bad I had to stay home from work for days. I was told it was "IBS") and in Feb. 2008, I "erupted" in horrible burning muscle/joint pain, insomnia, exhausted, foggy head came on me out of nowhere, itching and red skin/scalp, hair loss,depressed moods! ..tons of debilitating and bizarre symptoms. Doctors were useless and I had to fight for many tests and blood work, even MRIs to find the CAUSE of the pain and illness. I was prescribed --and ultimately sickened by--hundreds of drugs to "try". That's what doctors do---medicate and "symptom-manage" and shove you out the door. One rheumatologist insisted I take methotraxate--even though I do not have rheumatoid arthritis!! I was given pain meds, sleep meds, arthritis drugs that ripped my gut, muscles relaxers, anti-depressants, anti-anxiety meds...etc... So many condescending doctors; so much anguish trying to find out what was wrong with me. One example of this craziness: The gastro's NP told me it was "just GERD" and gave me a whole slew of drugs, including anti-depressants!! (which I threw away). She snarled at me "Don't be ridiculous!You can eat gluten." EVERY drug I tried (briefly) because I was desperate --and they all made me sicker and sent me to the ER more than once with dehydration. I lost 90 lbs rapidly and most of my hair and I thought I would die before someone figured it out....I even said the words, "I would rather be dead than live like this"--even though I did not really mean it because I would get out of bed every single day and fight to find an answer. I was skin and bones --I was very "voluptuous" :>) and active before this happened to me!!---but I couldn't keep anything in. They said I was hypothyroid, put me on synthroid, but it made me go "hyper" so I asked another doctor to check my TSH--it was fine and I had very low thyroid antibodies so I asked him if I needed to take it--he said NO!
For pete's sake!! What the heck was going on then?? I was trembling and unable to sleep more than 2 or 3 hours a night for many months...and I developed anxiety (something new for me) ...and of course, the doctor gave me xanax and a script to see a psychiatrist.!!! Because my father had just died and I was obviously upset and feeling so poorly, I went. I am psychologically sound (gee, that's good to know!!:>) and the psychiatrist actually said to me....Do you have food allergies?? I am grateful to her for suggesting it because that's when I started researching. Turns out, that was likely when the celiac was "triggered"....even though I had classic GI symptoms my whole life. This horror dragged on and on. Everyone tried to give me drugs, not help me get well. Told me it was "menopause", "stress" and I would leave a doctor's office and say "you don't know ME---this is not "just stress". I'm ill because of something going on in my gut!!I knew it had to be SOMETHING so, I started reading and researching and wondered about celiac. Begged for a blood test--it was "indeterminate". Whatever that means.
I was determined to find the CAUSE of my problems.I even went to a Naturopathic Doctor who treated me for a year and said "maybe it's gluten"?? I should have listened to her--instead of the MD who told me (after an IgG test that said I had a severe reaction to" soy" ) to avoid that for 6 months.I did as he said, using a rotation diet that included WHOLE WHEAT !! and guess what? Worse symptoms!
I wandered from specialist to specialist for 3 years, getting more and more burning neuropathy and struggling to walk and sit and lie down without pain, and doing anything I could to get the musculo-skeletal pain under control with all forms of PT, massage, chiropractic, biofeedback, acupuncture,etc...with NO relief. Doctors shrugged their shoulders at me. We even thought about going to the Mayo Clinic. We had spent thousands of dollars--our entire savings--looking for an answer. We made jokes about finding a DR. HOUSE to figure me out. But it wasn't really all that funny.
One day, I received an email from my cousin's wife (a celiac) who said...I heard about your struggle with a mystery illness---are you sure it's not gluten??? PLEASE GO GLUTEN FREE RIGHT NOW! My husband, who has watched me deteriorate for 3 years said "I AGREE"--I don't care what the tests or the doctors say...let's do this!!
So, we did.
A few weeks later, I returned to my primary care doctor and told him what I believed was wrong with me...and he said with a look of horror on his face " OMG, you are right!! I don't care what the blood work says...those tests can be wrong! NO gluten and dairy !!You had so many symptoms, I didn't make the connection..." Now, this guy has children with celiac and he could not see that was what I had??? &^%$! He apologized, but I am having a hard time trusting doctors ever again. I refuse to eat gluten to have the biopsy done. I am not poisoning myself!
I aged 10 years in 2. I do not even recognize myself in the mirror. My legs and arms are so weak. This even affected my once beautiful white teeth. I am a mess.
But, I refused to give up.
I am gluten, soy, diary free and see some improvement in just a month(no diarrhea is a huge thing:>) WHOOHOO! but I imagine it will take me a long time to heal as I have had poor health for so long. In retrospect, I can see how it all started in 1985 with the removal of my gall bladder; DXed with "IBS","fibromyalgia"..I had many inexplicable miscarriages, etc...sigh...

ah well, ...I keep my eyes on the prize! I look forward to healing and regaining my health and my life.
whew--that was long, but serves as proof that (1) not all tests are conclusive (2) symptom treating doesn't solve the problem and (3) we are our own best advocates!!Thanks for "listening". This forum has been beyond helpful to me and I am grateful!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#86 FarmCat

 
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Posted 29 January 2011 - 10:28 AM

In my household we have one of each. I am self-diagnosed gluten-intolerant: blood work and gastroscopy both negative, trace amounts don't bother me, larger amounts do. My husband, on the other hand, just had a positive biopsy last week. He has very obvious and medically-confirmed Celiac disease.
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#87 Jill0711

 
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Posted 29 January 2011 - 06:30 PM

I have to chime in and say that my doctors were actually pretty fast in coming to a diagnosis. I was sick for six months prior to diagnosis. My primary care doctor did a whole slew of bloodwork, yet neglected to throw in a Celiac panel. I think that part of the issue is that most doctors think of Celiac disease as having D as the main symptom; however, the diarrhea doesn't start until a lot of damage is done to the small intestine. I consider myself lucky that I see an endocrinologist who personally has Celiac disease. We were discussing my symptoms and the first thing he says to me is "Have you been tested for Celiac disease"? So, I guess I can say that not all doctors are clueless B) Ironically, my blood work was negative. I actually had the EDG done to look for an alternate diagnosis. The gastro doctor said that he might as well biopsy the small intestine while he was in there even though my blood results were negative. I'm very fortunate that he did because the results were positive. Having a diagnosis is good for me because I can honestly admit that I may not have stuck with the diet without it. I feel better already and I can say that even CC immediately brings back all the symptoms.
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#88 okieinalaska

 
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Posted 29 January 2011 - 07:45 PM

I had GI symptoms for about 15 months or so before I finally went to the doctor. I had one bad summer and then I felt better (mostly) for a while. Then this fall I finally had a stabbing pain in my side that I was sure was my gallbladder. I finally went to the doctor. Once I finally went to the doctor I was diagnosed fairly quickly. Thankfully he ruled out my gallbladder and then ran lots of bloodtests including celiac panel. Silly me said "Boy I hope it's not celiac, I don't think I could eat like that".

Of course it came back positive. Then it took 6 or so weeks from then to get my endo (which was Jan. 20) and came back positive.

I feel pretty lucky my doctor never once told me it was in my head and was willing to test for lots of different things.

When I told him I thought he did a great job he said it would pretty hard to miss it with it being in the news and with so much more awareness out there now. Form what I hear on here, I wish that were always the case.
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Amy in Alaska
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#89 mushroom

 
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Posted 30 January 2011 - 12:30 AM

Well, I think it still is the case (in some cases :P ) but I think less and less so, thank goodness. I am glad your path was relatively smooth. Hope it' s the same for more and more of us :) We deserve a break.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#90 BethM55

 
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Posted 30 January 2011 - 09:56 AM

My doctors have ignored me for years. I didn't know that Celiac/gluten intolerant even existed. It wasn't until I had a random visit with a new chiropractor who within ten minutes told me I had a gluten problem. After ten years and thousands of dollars in tests, I was reluctant to believe him. I did the glutenfree diet for 30 days, thats all he asked of me. Why not, couldn't hurt....I am here to say that most of my problems went away especially the migraines and the vertigo. I have my life back thanks to that chiropractor. I followed up with enterolab and results pointed that I have the gene.

I am disgusted with doctors and forever grateful to my chiro.

Good luck with your future health, you are your best advocate.



Thank you for your last sentence. I needed to hear that.
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Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.




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